Meet Me in St Louis!

Come spend some time with me and Dr. Pratap Chand Saturday morning, August 17, 2013 from 9:30 – 11:30 am at the St Louis Airport Marriott learning more about essential tremor. Go to www.essentialtremor.org/seminars to register. I look forward to meeting you and together learning about the medications, surgical options and research that is being done in ET.

Come and wear your button and take a picture with me so we can show people where our buttons have been and also to increase awareness around the St Louis area!

Milwaukee ET Event

We had a great time in Milwaukee with 80 people attending the extremely educational ET seminar. The presentations were very well done and provided a lot of information. Dr. Pahapill talked about his 20 year experience in the treatment of ET with deep brain stimulation and Dr. Blindauer reviewed the many medications that are often used and why some may not be successful in the treatment of ET.

For more information about the Froedtert and Medical College of Wisconsin Neurosciences Center go to: http://www.froedtert.com/SpecialtyAreas/ParkinsonsMovementDisorders/

 

 

 

 

July DC Report

In July, Tom Bruderle, IETF Legislative Liaison, and Catherine Rice, IETF Executive Director participated in the July 22 NIH BRAIN Initiative Webinar designed to engage the patient advocacy community in the research pursuant to President Obama’s commitment earlier this year. There were about 100 people on the call with a second event anticipated sometime in the fall. Currently, NIH is developing specific scientific goals for the Initiative and has a website up and running at http://www.nih.gov/science/brain/index.htm where you can follow the progress.

Not much has occurred this month in the House and Senate. Tom continues to increase awareness and educate our congressional representatives about essential tremor. If you have a congressional representative or senator in DC that you would like for Tom to visit, please send us an email at info@essentialtremor.org.

 

Milwaukee Wisconsin here we come!

Hello Milwaukee and surrounding areas!

We will be facilitating another free ET education event/seminar on August 10 in Milwaukee. Come join us as we get together with the ET community to learn more about the diagnosis process and treatments available from Drs. Karen Blindauer and Peter Pahapill of the Medical College of Wisconsin. Follow this link www.essentialtremor.org/seminars  to register online or call toll-free at 888-387-3667. We look forward to seeing you there!

Learn more about the Brain Initiative

Follow the progress and learn more about Brain Research through Advancing Innovative Neurotechnologies – the BRAIN Initiative – at www.nih.gov/science/brain/index.htm. This is an extremely important project because it accelerates our understanding of how the brain works. This in turn will help advance research that develops new interventions for conditions and diseases – like ET! The new tools and technologies that will be developed will lift all research to new levels and provide breakthroughs in the future that enable the development of better treatments and cures to be found.

New study searches for more precise diagnostic tool

Brain ChangesIt is sometimes difficult, even for a trained neurologist, to tell the difference between Parkinson’s disease and essential tremor when it is in the early stages, as they can share similar symptoms (such as resting tremor). A new Taiwan-based study investigated changes in brain volume in people with essential tremor and Parkinson’s disease, searching for a pattern that might help differentiate between to the two conditions more easily.

The study found that although both ET and PD patients showed a decrease in brain volume in areas involved with movement and muscle control, it also showed increases in other distinct areas. Researchers speculate that this is due to the ability of the brain to compensate for damaged areas by developing and strengthening new pathways, thus increasing the size of those areas.

Although further study is needed, it appears that looking specifically at the areas of the brain that increase in volume, along with other diagnostic and assessment tools, may allow physicians to more accurately differentiate between ET and PD.

Read the abstract.

Focused ultrasound Phase 1 study results presented

Recently, during the annual meeting of the American Association of Neurological Surgeons, IETF Medical Advisory Board Member Dr. W. Jeffrey Elias presented the results of the first phase of the University of Virginia’s focused ultrasound study. Elias reported that after one year, study participants showed improvements in daily disabilities and quality of life. Publication of the actual study data is pending.

Read more about focused ultrasound.Dr. W. Jeffrey Elias photo

Where Has My Button Been?

Omaha 2 WHMBBHello Everyone!

We had so much fun at the Omaha Education Seminar and we all learned a lot from Drs. Torres-Russotto and Follett. We want to give both of them a huge thank you for sharing their time and expertise about ET. To learn more about the Movement Disorders Center at the University of Nebraska in Omaha go to http://www.unmc.edu/neurologicalsciences/movement_disorders.htm.Omaha Event WHMBB

Please join us in Irvine, CA for the upcoming event on Saturday, April 27. You can learn more at http://www.essentialtremor.org/Seminars. I would love to meet and share in the experience with you.

Mindfulness & ET

When medical or surgical therapy has not controlled all of the symptoms of essential tremor, some people have found that focused breathing and meditation are effective practices for calming the mind and body. In the cover story of our most recent Tremor Talk magazine, Dr. Monique Giroux writes that employing such mindfulness strategies can reduce the negative impact of stress and sharpen the mind’s potential for personal healing.

Dr. Giroux is co-founder of the Movement and Neuroperformance Center of Colorado in Englewood, Colo., and medical director of movement disorders for Swedish Medical Center.

“It is a way to stay in the present moment, engaging in life and living life as fully as you can,” she says. “Mindfulness can be a helpful tool to enhance the effect of medicine and surgery on tremor control. The next time your tremor feels ‘out of control,’ take a moment to reflect, and know that you have control in how you respond.”

Is mindfulness part of your regimen to regulate ET’s impact on your life? What has your personal experience been? Please share: inquiring minds want to know!